Find out what Australian researchers are publishing in palliative care 

The following lists palliative care research primarily conducted by Australian research groups. The list is based on application of the CareSearch search filter for palliative care to identify articles held within the PubMed database and corresponding to the strongest evidence. Articles have been selected based on relevance and new articles are added on a weekly basis.

Whilst not an exhaustive list, the aim is to keep the community informed by providing a snapshot of recent research findings and planned studies in the Australian setting.

9 May 2022

Designing Palliative Care Facilities to Better Support Patient and Family Care: A Staff Perspective

McLaughlan R, Richards K, Lipson-Smith R, Collins A, Philip J.

Objective: To contribute staff perspectives on the design of palliative care facilities to better align with the philosophy of palliative care, in support of patient, family, and staff well-being.

Background: The receipt of palliative care differs from other inpatient experiences owing to its distinct philosophy of care, longer lengths of stay, a greater presence of family members, and more frequent end-of-life events. While research regarding the optimal design of palliative care environments recognizes these differences, this knowledge has been slow to exert change on the guidelines and procurement processes that determine the design solutions possible within these settings. Sustained research attention is required.

Methods: An online survey, comprising a series of open-ended questions, elicited the perceptions of palliative care staff regarding the relationship between the physical environment and the distinct philosophy of palliative care.

Results: Responses from 89 Australian-based palliative care professionals confirmed the high value that staff place on environments that offer privacy, homeliness, safety, and access to gardens to assist the delivery of optimum care.

Conclusions: Our findings illustrate that the implications of privacy and homeliness extend far beyond the patient room and that homeliness is about more than an aesthetic of comfort. This highlights a broader capacity for design to better support the philosophy of palliative care. Importantly, the data reveal a key relationship between staff well-being and the environments in which they work; environments that are unable to match the quality of care that staff aspire to deliver can engender frustration and distress.

9 May 2022

Attending to child agency in paediatric palliative care consultations: Adults' use of tag questions directed to the child

Ekberg K, Ekberg S, Weinglass L, Herbert A, Rendle-Short J, Bluebond-Langner M, Yates P, Bradford N, Danby S.

Children's agency in their own lives is increasingly recognised as important, including within paediatric health care. The issue of acknowledging child agency is complex in the context of paediatric palliative care, where children have serious and complex conditions that often impact their ability to verbally communicate with others. This study explores how clinicians and parents/guardians direct talk towards a child patient when they are present in a consultation. Conversation analysis methods were used to examine 74 video-recorded paediatric palliative care consultations. Detailed turn-by-turn examination of the recorded consultations identified the recurrent use of a practice described by linguists as a 'tag question', which follows some statement (e.g. 'he loves that, don't ya'). Both clinicians and parents/guardians often directed these tag questions towards the child patient. Analysis demonstrated how these tag questions: (1) validated the child's epistemic authority over what was being said and (2) made a child's response a possible, but not necessary, next action. The findings are discussed in relation to the sociology of child agency and how this agency is acknowledged and displayed within and through social interaction. This research provides direct evidence of children's competence as informants about their own symptoms.

9 May 2022

End of life care pathways in the Emergency Department and their effects on patient and health service outcomes: An integrative review

Heufel M, Kourouche S, Angela Lo WS, Thomas B, Hood L, Curtis K.

Introduction: End of life (EOL) care in the Emergency Department (ED) requires focused, person-centred care to meet the needs of this vulnerable cohort of patients.

Methods: An integrative review of the literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guideline was conducted. Studies were included if they were primary research relating to patients in the ED at the EOL, and/or evaluated EOL care pathways in the ED. Databases OVID Emcare, OVID Medline, and Scopus were searched from 1966-September 2021; followed by screening and appraisal. Articles were compared and data grouped into categories.

Results: Eleven research articles were included generating three categories for EOL care in ED. 1) tools/criteria to identify patients who may require EOL care in ED; 2) processes for providing EOL care, and 3) implementation methods/frameworks to support the uptake of EOL care processes.

Conclusion: There were some commonalities in the criteria used to identify patients who may be at their EOL and the interventions implemented thereafter. There was no standardised process for screening for or treating EOL care needs in the ED. Further research is required to determine the impact that EOL care pathways have on patient and health service outcomes to inform strategies for future policy development.

9 May 2022

Illness uncertainty and risk management for people with cancer

Stone L, Olsen A.

Background: Patients with cancer live with considerable uncertainty. This uncertainty can be related to the process of diagnosis, treatment, remission or palliative care, and therefore it can be experienced repeatedly or continuously throughout a patient's life. For patients with low literacy or low numeracy, it can be difficult to access, understand and interpret risk, so shared decision making may be difficult.

Objective: The aim of this article is to address the challenges of managing anxiety and uncertainty for patients with cancer in the general practice setting.

Discussion: The diagnosis of cancer is a life-changing event, and it can herald a long journey of anxiety, uncertainty and change. General practitioners (GPs) can assist patients to navigate complex health systems and find a sense of autonomy and agency in an otherwise marginalising life experience. For patients with low literacy and numeracy, GPs have a critical role in enabling shared decision making and ensuring consent is fully informed.

9 May 2022

A Systematic Review of the Development and Implementation of Needs-Based Palliative Care Tools in Heart Failure and Chronic Respiratory Disease

Waller A, Hobden B, Fakes K, Clark K.

Background: The impetus to develop and implement tools for non-malignant patient groups is reflected in the increasing number of instruments being developed for heart failure and chronic respiratory diseases. Evidence syntheses of psychometric quality and clinical utility of these tools is required to inform research and clinical practice.

Aims: This systematic review examined palliative care needs tools for people diagnosed with advanced heart failure or chronic respiratory diseases, to determine their: (1) psychometric quality; and (2) acceptability, feasibility and clinical utility when implemented in clinical practice.

Methods: Systematic searches of MEDLINE, CINAHL, Embase, Cochrane and PsycINFO from database inception until June 2021 were undertaken. Additionally, the reference lists of included studies were searched for relevant articles. Psychometric properties of identified measures were evaluated against pre-determined and standard criteria.

Results: Eighteen tools met inclusion criteria: 11 were developed to assess unmet patient palliative care needs. Of those, 6 were generic, 4 were developed for heart failure and 1 was developed for interstitial lung disease. Seven tools identified those who may benefit from palliative care and include general and disease-specific indicators. The psychometric qualities of the tools varied. None met all of the accepted criteria for psychometric rigor in heart failure or respiratory disease populations. There is limited implementation of needs assessment tools in practice.

Conclusion: Several tools were identified, however further validation studies in heart failure and respiratory disease populations are required. Rigorous evaluation to determine the impact of adopting a systematic needs-based approach for heart failure and lung disease on the physical and psychosocial outcomes of patients and carers, as well as the economic costs and benefits to the healthcare system, is required.

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Last updated 28 February 2022